I have no adrenal glands... AMA
I have very rare genetic diseases called PPNAD (Primary Pigmented Nodular Adrenocortical Disease) and Carney Complex. I had an over 7-hour long surgery in which my adrenal glands removed, when I was in 11 years old.
I had to have my glands removed, as they were over producing cortisol and causing my body to deteriorate. I gained about 50 pounds in about half a year, which was over half of how much I weighed then. I also had constant migraines so bad I would throw up. These symptoms were caused by Cushing's, which results from PPNAD. At 11, I was given the choice to have them removed or die in my early 20s.
WHAT I DEAL WITH:
- I have to take Hydrocortisol and Fludrocortisone daily or I'll die (within 2-3 days).
- I have an almost non existant immune system, which causes me to get very sick quite often. I have had 2 near death experiences just from getting stomach bugs, because my body cannot absorb my medication when I get dehydrated, sending me into "adrenal shock". My body goes into a coma like state and I am treated with the urgency of a heart attack patient.
- I also have chronic, nightly nausea which has kept me up almost every night since I was 10. (yes. every night.) No one knows what causes it. I have been to the National Institute of Health and even they are stumped. We know it has something to do with my circadian rhythm, as it is every night at almost the same exact time (9:30-10pm). When I travel to different time zones, the nausea realigns with the same time, once I recover from jetlag.
- Understandably, this has all affected my mental health as well.
I have a ton of freckles (username checks out) in really odd places: on my lips, inside my mouth, on my eye and eyelid, ect. It's part of Carney's.
I feel like all of this is proof enough, but here's a picture of me and a portion of my emergency medical documents. (covered over my name and other important info with sticky notes)
Feel free to ask about the condition. Most medical professionals I meet know little about PPNAD, because it's so rare, so I'm fine with explaining it in more detail. I have some pretty interesting stories about being hospitalized at a research facility, near death experiences, and living with disabilities.
Some people wanted to see what the freckled on my lips look like, so here ya go. I'll probably keep comments and stuff open for a few more hours then be done. If anyone else has any questions afterwards, feel free to PM me.
Please limit trying to diagnose my nausea in those messages, if you're just guessing. I have really tried about every method and medication, and there's a lot of specific info that I didn't add to my post. We know that it isn't just mental, and we are pretty sure it has something to do with how much melatonin my body produces. The problem is that there is no way for me to actually test what we narrowed it down to a few years back, due to my lack of adrenal glands giving very off readings of my body temperature and hormones. I appreciate the many of you who have tried though.
Many people have asked how it is to live with a disability, and I was thinking about it more last night. I remembered the best explanation I have ever read called the Spoon Theory. It's a short read and I feel like it gets the point across really well.
Finally, I wanted to tell everyone who has sent supportive messages: Thank you so much. <3 It really means a lot, and I'm very glad I can help more people learn about others with disabilities and their own bodies.